Saturday, April 3, 2010

The Unexpected

The unexpected usually never comes at a good time.....but this time was extremely bad timing!!!

Yesterday Mason was discharged around noon to go home from the CVICU, because he was doing very well post- heart cath. We headed right back to our home away from home to take a nap and get some rest before our family arrived (we'd had quite a sleepless night).

Around 6:30 we got a very exciting knock at the door. Mark, Kaitlin, Preston, Braiden, Ammon and Sammi ( our lifesaver nanny) had arrived after a 14 hour drive from Utah! Mason screamed with surprise and excitement as he lifted both of his hands above his head waving out our special visitors. It was absolutely precious to see Mason smiling so big as we a hugged each of our long awaited visitors. It had been a long 6 weeks since I'd seen my 4 other beautiful children.....oh how I've missed them!!!

Okay, now for the poorly timed unexpected event.........15 minutes after they arrived, Mason was sitting on the floor playing toys with the kids and all of a sudden he fell over. I figured he'd been bumped, because that's not normal for him, so I tried to help him sit back up........but he couldn't! The whole right side of his body was very weak and almost limp! Then I also noticed that his right eye and the right side of his mouth were drooping too! My heart sank! I immediately thought STROKE......he'd just had a catheter and central line plus 2 IV's which are all possible causes for blood clots.....I was scared!!

Even though after 10 minutes he seemed to be regaining his strength and after 30 minutes back to normal........after consulting by phone with Cardiology (during that 10 to 30 minutes) Mark and I took him to the ER.

Around midnight, after a CT scan on his brain, an ultrasound on his legs and groin area (where he'd had his catheter and central line, and many discussions with the 'on call' neurologist and cardiologist.........Mason was readmitted to the CV-ICU to be monitored and started on blood thinners.

The good news: Mason's CT showed no damage. The bad news: Mason did have a TIA (transient ischemic attack) which is a mini-stroke" that produces stroke-like symptoms but no lasting damage.TIAs occur when a blood clot temporarily clogs an artery, and part of the brain doesn't get the blood it needs. And the ultrasound showed a blood clot in his right groin. So, most likely a piece of that broke off and caused his TIA.

Now the important treatment of action is to try and prevent this from occurring again. Another one could be more severe and cause damage! Thus Mason will be on blood thinner shots 2x daily for several months. Right now we will be in the CV-ICU probably through Monday. They want to monitor him to watch for another TIA (very unlikely, but still possible) and Mason has to have frequent blood draws to check for the correct level of blood thinner medication before we can be discharged.

This is NOT how we planned to spend Easter!!!

Please help us pray for no more stroke episodes and that his clots may dissolve quickly. We sure hope and pray his healthy new wonderful heart comes soon too. Thank you for all your love and concern.

12 comments:

Oh no!! What a terrible time to have this unexpected setback, especially when you have your whole family together for Easter! I am sorry that you will have to give him the Lovenox shots... that is miserable. We will pray that Mason's clots dissolve and cause no more problems! I am so glad you have Mark with you during that scary ordeal!

I am SO sorry!! :( While it's aweful timing, it's a blessing that you have Mark and Sammi there too! I hope you can find time to spend with all your kiddos while they are there! We're thinking of you guys and PRAYING for the clots to dissolve so Mason has no more setbacks. And those darn Lovenox shots... my heart is aching for him!!

Darn it, these heart babies sure like to take the hard road. Poor little guy. I am glad you were able to see your cute family and that they were there to support you during that scary time. Yes, we will pray for that heart to get here quick! I hope you can have a Happy Easter :)

That sounds all too familiar!! Gracie had a 'watershed ishemia' type of stroke after her cath as well. It is such a roller coaster ride! I am glad you had the support of your husband and kids there to deal with this latest episode!! So glad things are better now. We will keep praying for you!!

Well, at least you had your family there with you. :) I am praying for this little guy! His story gets more amazing every single day! Just like you, I am sure, I am waiting for that blog entry that says. "MASON IS HEALED!!!" Praying for a miracle and strength. :) Angie's Support Team

I am praying with you that it is just a single occurence from the heart cath and Mason will be released soon.My sister had TIA's for a while and then they found she had a hole in her heart since birth...at age 65, can you believe it was never found before?I am so glad you and Mason are surrounded by family'Many Easter Blessing to you!

There has been a trust fund set up on behalf of Mason Andrew Strickland. You can donate by calling or visiting any Wellsfargo branch.https://www.wellsfargo.com/locator/OR by clicking on the "Donate" button below.

Mason Andrew Strickland was born on November 30, 2007! He came 3 weeks early at the American Fork Hospital, weighing in at 5 lbs 8 oz . He is the baby brother to 3 brothers and 1 sister. At 3 days old he became very sick at home. After a trip by LifeFlight to Primary Children's Hospital that afternoon he was diagnosed with a variation of Hypoplastic Left Heart Syndrome. Mason will need at least 3 open heart surgeries before he is 3 years old. He had his first surgery when he was 10 days old and spent 7 weeks in the hospital. He had his 2nd surgery at 6 months old and only spent 1 1/2 weeks in the hospital. Mason also has issues with arythmias which has caused him some scary moments, a 2nd trip by Life Flight, and more time back at Primary's PICU. We feel blessed for everyday we have him here with us. We have created this blog to follow our journey through life with our little broken hearted baby, Miracle Mason (with a few tid bits about the rest of the family too).

It's now October 3, 2009 and Mason's story needs be updated. In April 2009 Mason was diagnosed with lowered heart function (or heart failure). From April through now he has been on medications and oxygen to help improve his heart function. In August, with no improvement seen in his echos we began the process to list him for a heart transplant. He is unable to get the 3rd surgery (or Fontan) as planned because of his heart failure. On Sept, 3, 2009 he had his pre-transplant Heart Cath (the last thing needed to list him for a new heart). The results that day have left us heart broken. He was diagnosed with severe pulmonary vein stenosis and is unable to receive a heart transplant. He will now need a heart-lung transplant, if he is a viable candidate. Since Primary's does not have a heart-lung program we are seeking opinions from other hospitals (outside of Utah) at this time. Even though we are extremely saddened with his most recent diagnosis, we continue to find joy in our journey with our special child of God, our sweet Mason.

(In November 2009 we learned of another possible option for Mason. CHOP and Stanford have both talked to us about doing just a heart transplant to his own one healthy lung. At this time we are exploring that option and the possibility of it being another true miracle for "Miracle Mason".)

February 16, 2010 Mason and I (Mom) flew to Palo Alto, California to do a few last tests and get Mason listed for a new heart(heart only!! not heart-lung!!) at Lucille Packard Children's Hospital at Stanford. We are excited and nervous to start this new chapter of our journey.

March 3, 2010 Mason was officially listed on the Heart Transplant waiting list as a 1B status. Mason and I will wait here in Palo Alto until he receives the miraculous gift of a new heart. We miss our family at home very much!

April 4, 2010 (Easter morning) Mason received his new heart. It was the best Easter gift our family could ever be given. We are eternally grateful to his donor family who during their time of loss selflessly gave our Mason a second chance at life.

July 16, 2010 Mason and Mom flew home to Utah to reunite with their family. Mason is still very immunosuppressed in order to avoid rejection of his new heart, but definitely happy to be home playing w/ his brothers and sister!!

January 30, 2012 Mason continues to do well with his new heart. He finally came off of steroids after 18 months in October 2011! Mason is walking with the help of a walker in hopes to walk alone soon. He conitues to have a few episodes of a pneumonia each year, probably due to only having one working lung. He also has a few new issues we are facing .....sleep apnea and severe scoliosis. But, over all he continues to face life with a fight and a big smile!

April 11, 2012 Mason had back surgery because his scoliosis had worsened to a curve of 75% (normal is 0-15%). He had two rods placed in his back, better known as the VEPTR (Vertical Expandable Prosthetic Titanium Rib). It was a rough recovery, but after about 8 weeks he was feeling much better. Every 6 months he will go in for a minor surgery to extend the rods to keep up with his growth.

May 25, 2012 We finally got into a sleep doctor and she diagnosed Mason with sleep hypoxia, rather than actual apnea. Because of narrow airways his sats dip frequently through out the night, but he doesn't completely stop breathing (good news!). So he was perscribed to be on one liter of oxygen at night while asleep.

July 20, 2012 Mason finally walks all on his own!!

Not a day goes by that we don't think about Mason's donor family who has given our little miracle boy the gift of LIFE! Thank you where ever you are!